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Unmet needs, quality of life and support networksof people with dementia living at homeClaudia Miranda-Castillo1,2, Bob Woods3, Kumari Galboda4, Sabu Oomman4,5, Charles Olojugba4, Martin Orrell2*

Abstract

Background: There is lack of evidence about the unmet needs of people with dementia (PWD) living at homeand the predictors of high levels of unmet needs. The main aim of this study was to identify the relationshipbetween unmet needs, social networks and quality of life of PWD living at home.

Methods: One hundred and fifty two community dwelling PWD and 128 carers were interviewed about PWD’sneeds, social networks, quality of life and other functional and psychological factors. All the interviews with PWDwere carried out at their homes. Interviews with carers were undertaken either at PWD’s home, their own home orat the health centre. Whenever possible, PWD and carers were interviewed separately. The data collection tookplace between November 2005 and July 2007. The majority of participants (129, 84.9%) were recruited fromNational Health Services (NHS) and the rest (23, 15.1%) were recruited from other organisations such as socialservices and voluntary organizations in the UK.

Results: The most frequent unmet needs for PWD were daytime activities (77, 50.7%), company (60, 39.5%), andhelp with psychological distress (47, 30.9%). Higher number of behavioural and psychological symptoms, low-community involvement social networks, having a younger carer and higher carer’s anxiety were found to bepredictors of higher unmet needs in PWD. Social networks and behavioural and psychological symptoms had anindirect effect on PWD’s self-rated quality of life through unmet needs.

Conclusions: Interventions aiming to reduce unmet needs, through the treatment of behavioural andpsychological symptoms and the involvement of PWD in the community, would potentially improve PWD’s qualityof life.

BackgroundUnmet needs in PWD have been found to be associatedwith higher anxiety, depression, and challenging beha-viours in care homes [1] as associated with being older,cognitive impairment and living alone in the community[2]. Hoe et al. [3] found that, in care homes, higherquality of life rated separately by residents and staff wasassociated with fewer unmet needs in residents. How-ever, this relationship has not been studied in a commu-nity sample. Evidence shows that PWD with limitedsocial networks are more vulnerable and at risk. Wenger[4] found that the most common social network typesin PWD were family-dependent (30%), which is reliantupon a few family members with few friends or other

community contacts; and private-restricted (26%), whichhad small social networks, with very few local kin,friends or other community contacts. Wilcox et al. [5]also found that low level of social support was asso-ciated with high score in overall need. It has also beenfound that PWD with higher unmet needs reported bytheir carers are more likely to either be placed in a carehome or die [6]. This is the first published study toinvestigate the relationship between unmet needs, socialnetworks and quality of life in PWD living at home aim-ing to identify factors that are associated with and/orpredict unmet needs which could allow, ultimately, theimplementation of interventions aimed to reduce unmetneeds of PWD. Unmet needs may be associated withlower quality of life [3,7] and smaller social networks[5,8] but in dementia the relationship between socialnetworks and quality of life has not been studied pre-viously. We hypothesize that larger social networks will

* Correspondence: [email protected] of Mental Health Sciences, University College London, 67-73Riding House Street, London, W1W 7EJ, UKFull list of author information is available at the end of the article

Miranda-Castillo et al. Health and Quality of Life Outcomes 2010, 8:132http://www.hqlo.com/content/8/1/132

© 2010 Miranda-Castillo et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited.

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be associated with better quality of life and that the rela-tionship between social networks and quality of life willbe mediated by unmet needs.

MethodsSampleThe study design was a cross sectional survey. A total of152 PWD living at home and their 128 informal carerswere recruited from health and social services, andvoluntary organisations in North East London (65 PWDand 54 carers), Cambridgeshire (81 PWD and 68 carers)and Liverpool (6 PWD and 6 carers). Inclusion criteriafor PWD were: being aged 60 or over, having a diagno-sis of dementia according to DSM-IV and living athome (not in institutions). A person was considered aninformal carer (spouse, relative, friend or neighbour)when he/she was knowledgeable about the person withdementia and spent a minimum of 4 hours a week indirect contact (face to face) with them. Only one personwas considered the nominated carer. A sample, similarto those obtained from previous community studies ofdementia in terms of living situation, was recruited: 65%of participants living with another person and 35% livingalone [9,10].At each centre, the manager or appropriate member

of staff was requested to make a first approach eitherwith the PWD’s carers or the PWD themselves (depend-ing on dementia severity and/or living situation) to givethem the Information Sheet and to discuss if they werewilling to be approached by the researcher regardingthis study. Participants who had no objection were con-tacted by the researcher by phone and were given moreinformation about the study as required. In addition,details of people who had attended the centre (PWD’sname, carer’s name, address, phone, etc.) were providedand a letter was sent to the carer and/or patient includ-ing information sheets about the study. One week after,the researcher contacted them by phone, answered anyquestions they might have, explained the study andlooked for their willingness to participate. If the poten-tial participant agreed to be involved, either theresearcher or an interviewer arranged a day to carry outthe interview at their homes.

ProcedureThe study was carried out in accordance with the latestversion of the Declaration of Helsinki. Ethical approvalwas granted by East London & the City HA ResearchEthics Committee 3. All participants gave informed con-sent. Once the interviewer was at the PWD’s or carer’shome, they answered any further queries and soughtinformed consent as follows: written consent by signinga Consent Form was required from people with demen-tia and their caregivers. In order to achieve this, the

interviewer approached potential subjects to explain thestudy and to inform them about their right to withdrawat anytime. Some PWD (11, 7.3%) were unable to pro-vide written consent. When this occurred, the inter-viewer sought their assent (verbal consent). During thisprocess, the interviewer made sure that he/she hadtaken as much time and care in explaining the informa-tion about this research as simply as possible. The inter-viewer avoided using long sentences and attempted toreduce any distractions. To find out if the participantshave understood the information given, the interviewerobserved their ability to ask any relevant questions andalso requested the participant to repeat back the infor-mation and how it would relate to them. In addition,the interviewer clarified any doubts about the study andreiterated their right to withdraw at anytime.Interviews were carried out by an experienced clinical

psychologist and old age psychiatrists who were trainedto undertake the interview. All the interviews with PWDwere carried out at their homes. Interviews with carerswere undertaken either at the PWD’s home, their ownhome or at a health centre (e.g. memory clinic, day hos-pital). Whenever possible, the PWD and the carer wereinterviewed separately. However, some carers wanted tobe present during the PWD’s interview. In this situation,the interviewer emphasized the fact that he/she wasinterested in knowing both parties’ views about thePWD’s needs and quality of life; and, as they wereunique human beings, both opinions do not necessarilyhave to be coincident and both were considered valid.Interviews were terminated immediately in presence ofany sign of discomfort. In addition, if the conditions athome were not appropriate to undertake the interviewwith the carer, the interviewer arranged a next meetingin other location.Using standardised instruments, PWD were inter-

viewed about their needs, cognitive status and quality oflife. This interview took an average of 30 minutesdepending on dementia severity. Carers were inter-viewed about the PWD’s sociodemographic details,needs, behavioural and psychological symptoms, func-tional status, quality of life, social networks, and servicesreceived. In addition, carers were assessed about theirown sociodemographic details, depression, anxiety andburden. This interview took about two hours and a half.

MeasuresInstruments administered to the person with dementiaCamberwell Assessment of Need for the Elderly(CANE) [11,12] The CANE is a comprehensive toolwhich offers a structured evaluation of needs in olderpeople in 24 areas of social, psychological, physical, andenvironmental needs rated as no need, met need orunmet need. The CANE also asks about formal and


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informal support/services. The CANE has shown goodlevels of reliability (a = 0.99) and validity (correlatedwith the CAPE-BRS, r = 0.66; and the Barthel r = -0.53)[11]. It assesses the needs of older people from the per-spective of the PWD, the carer, the staff and theresearcher. Since ratings from the researcher wereobtained for the complete sample (n = 152), in this arti-cle only researcher ratings were included. Researcherswere trained by an expert (MO) to undertake the inter-views using the Camberwell Assessment of Need for theElderly (CANE) [12]. Pilot interviews were discussedand agreement in rating criteria was achieved. TheCANE was selected because it has good psychometricproperties and it has already been used to assess theneeds of PWD [1,13,14].Mini Mental State Examination (MMSE) [15] Thistest assesses cognitive function including orientation,memory and attention. MMSE has been widely used inclinical and research practice [16]. The MMSE takes 5 to10 minutes to administer. Its reliability (internal consis-tency) in community samples range from 0.54 to 0.77and 0.96 in medical patients [17]. Regarding validity,MMSE has shown high correlations with several othertest that measure different aspects of cognitive function-ing ranging from 0.66 to 0.93 [17]. This brief screeningtool was used to estimate the severity of PWD’s cognitiveimpairment. This instrument was rated by the researcherin an interview with the person with dementia.Quality of Life in Alzheimer’s Disease (QoL-AD) [18]The QOL-AD measures quality of life in PWD includingareas such as physical health, energy, mood, living situa-tion, memory, family, marriage, friends, self as a whole,ability to do chores around the house, ability to do thingsfor fun, money and life as a whole. The scale allows bothself-report ratings from the person with dementia andproxy-ratings from the caregiver. The QOL-AD hasshown good levels of reliability and validity. In the origi-nal study, internal consistency was good (a = 0.88) [18].Regarding convergent and divergent validity, QOL-ADshowed a negative correlation with depression (-0.20) butno significant correlation was found with cognition(-0.09, p = 0.19) [19]. This measure was chosen becauseit is short and easy to administer, it assesses PWDs’ andcarers’ perceptions about the person with dementia’squality of life, it can be used with people with MMSEscores as low as three [13] and it has been pointed out bythe INTERDEM group as the instrument of choice toassess quality of life in PWD [20]. The QoL-AD PWDversion was administered by interviewing the PWD andthe carer version was self-administered by the carer.Instruments administered to the carer to obtain informationabout the person with dementiaCamberwell Assessment of Need for the Elderly (CANE)[11,12](See above)

Quality of Life in Alzheimer’s Disease (QoL-AD) [18](See above)Neuropsychiatric Inventory (NPI) [21] The NPI is astructured interview designed to assess a broad range ofbehavioural and psychological symptoms commonlyencountered in PWD [21]. This tool has shown highinternal consistency reliability for the frequency/severityproduct scores (a = 0.88) and for the specific severity (a= 0.87) and frequency (a = 0.88) ratings [22]. The NPIhas been indicated by the INTERDEM group as the mea-sure of choice for assessing behavioural and psychologicalsymptoms in dementia because it assesses a wide range ofbehaviours, it has shown sensitivity to behaviouralchanges and its comprises the assessment of carer’s stressgenerated by the symptoms [20]. The NPI was rated bythe researcher in an interview with the carer.Physical Self-maintenance Scale (PSMS) and Instru-mental Activities of Daily Living Scale (IADL) [23]The PSMS assesses functional status through a ratingmade by the person or an informant about the person’sability to perform basic activities of daily living indepen-dently. The IADL scale has been designed to evaluatemore complex daily tasks which reflect environmentaladaptation. The IADL scale has shown good validity andreliability (from a = 0.87 to a = 0.91) [23]. This tool hasbeen extensively utilised by researchers and clinicians toassess ability for instrumental functions. The PSMS/IADL has been widely used, it is easy to complete andhas been recommended by the INTERDEM group as ameasure of choice in dementia care research [20]. ThePSMS and IADL were rated by the researcher in aninterview with the carer.Practitioner Assessment of Network Typology (PANT)[4] The PANT was developed to assess older people’ssupport networks. The instrument comprises 8 itemsabout three main features: availability of local close kin,level of involvement of family friends and neighbours,and the level of interaction with the community andvoluntary groups. Thus, networks are characterised intofive main types:

• Local family dependent support network. Includesclose local family ties with a few peripheral friendsand neighbours. It is a small network (1-4). Olderpeople in this network generally live very near to orin co-residence with an adult child, they are lesslikely to be in good health, and their communityinvolvement is low.• Locally integrated support network. It is the mostcommon and the most robust. This network is com-posed by local family, friends and neighbours; it islarger than average (+7) and implies high levels ofcommunity involvement. This network is related tothe fewest risks.


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• Local self-contained support network. Reliancemainly on neighbours and occasional contact with atleast one relative more than five miles distant. Thisnetwork is average size (5-6). Community involve-ment, if any, is low. Risks are associated with con-cern for privacy.• Wider community focused support network. It ischaracterized by the absence of local kin. This net-work includes mainly friends living within 5 miles,some neighbours, and family living more than 50miles away. The size of this network is larger thanaverage (+8). Community involvement is usuallyhigh.• Private restricted support network. It is associatedwith absence of local kin other than the spouse. Thisnetwork is composed by relatives who live morethan 50 miles away and is smaller than average.Usually comprises two subtypes: independent mar-ried couples and older people who have withdrawnor become isolated from local involvement. Itincludes minimal contact with neighbours and nocommunity involvement. Members of this networkare most at risk.

The PANT was rated by the researcher in an interviewwith the carer.Client Service Receipt Inventory (CSRI) [24] Thisinstrument collects retrospective information about thepatient and the carer such as accommodation, medica-tion, income and expenditure, hospitalisation and ser-vices received by the patient during the last threemonths [24]. The CSRI has been widely used and hasproved useful to assess care receipt service and the asso-ciated costs. The CSRI was rated by the researcher in aninterview with the carer.Instruments administered to the carer to obtain informationabout themselvesHospital Anxiety and Depression Scale (HADS) [25]This self-administered instrument is divided into twosubscales: anxiety (HADS-A) and depression (HADS-D)each one including seven items [25]. Internal consis-tency reports vary for HADS-A from 0.68 to 0.93, andfor HADS-D from 0.67 to 0.90. Sensitivity and specifi-city for both subscales is about 0.80. Concurrent validityhas been reported between 0.60 to 0.80 [26]. This mea-sure was chosen because it does not include somaticitems (which are not recommended when assessinganxiety and depression in older people), it can be usedwith younger and older carers [27] and it has been usedin previous studies of dementia carers [13,28]. TheHADS was self-administered by the carer.Zarit Burden Interview (ZBI) [29] The Zarit BurdenInterview is composed by 22 questions about the impactof the PWD’s disabilities on the caregiver’s life. For each

item, caregivers are asked to indicate how often theyhave felt that way. Reliability has been estimated at 0.71and 0.91, and validity has been estimated at 0.7 [30].This measure was chosen because it has good psycho-metric properties, it is the most consistently used inresearch and it was developed specifically for carers ofPWD [29]. The BI was self-administered by the carer.

Data AnalysisStatistical analyses were undertaken using the SPSS 15.0software package and AMOS 7.0 [31]. The significancelevel used was p < 0.05. Since needs (met and unmet)were not distributed normally, non-parametric testswere performed. For a better understanding of theresults, when comparing groups, means instead of ranksare shown.In order to identify predictors of unmet need, a step-

wise multiple linear regression was performed. In addi-tion, in order to test the theoretical model a pathanalysis was carried out using AMOS 7.0. For this analy-sis, only the main variables of this study were consid-ered: living situation (alone vs. with others), behaviouraland psychological symptoms (NPI score), servicesreceived, unmet needs, social networks, quality of life(rated by patients and carers) and carers’ mental health(depression, anxiety and burden). Variables skewed ≥1(’Unmet needs’ and ‘NPI Score’) were transformed [32].Maximum likelihood method was used to estimate themodel. Chi-square statistic for the model was reported.A non significant c2 value indicates that the model doesnot occur by chance. The Normed Fit Index (NFI), andComparative Fit Index (CFI) were reported. Values ≥0.90 indicate good fitting of the model [33]. Finally, theRoot Mean Square Error of Approximation (RMSEA)which is sensitive to the number of estimated para-meters in the model and penalizes the lack of parsimonywas reported. A RMSEA value less than 0.05 with a nar-row confidence interval (CI) denotes adequate parsi-mony [34].

ResultsParticipantsDemographics and Clinical Characteristics of People withDementiaThe demographics and clinical characteristics of PWDare shown on Table 1. The age of PWD ranged from 60to 94 years (M = 79.2, s.d. 6.8). There were 74 (48.7%)males and 78 (51.3%) females. Women (M = 80.6, s.d.6.1) were significantly older than men (M = 77.7, s.d.6.1) (t (150) = -2.7, p <0.01). One-hundred and fortyseven (98.7%) of the participants were white, only onewas black (0.7%) or Asian (0.7%). Most were living in ahouse (119, 81.5%), and the rest were living either in aflat (16, 11%) or sheltered housing (which consists of


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self-contained unfurnished flats with the services of amanager or warden who lives on the premises or nearbyand can be contacted through an alarm system if neces-sary) (11, 7.5%). Over a half (84, 55.3%) were married/living with a partner, 58 (38.2%) were widowed, and theremainder were either separated/divorced (7, 4.6%) orsingle (3, 2.0%). About one third of the sample was liv-ing alone (50, 32.9%) and the rest were living withothers (102, 67.1%). One hundred and thirty seven(90%) PWD had a carer and 15 (9.9%) had no identifi-able carer. Only one person with dementia was a carerhimself (0.7%).The total sample of PWD had a mean MMSE score of

19.13 (s.d. 7.2) indicating moderate cognitive impair-ment. Almost half of PWD (71, 47.3%) had a mild levelof cognitive impairment (MMSE >21), 57 (38%) hadmoderate cognitive impairment (MMSE 11-20), and 22(14.7%) had severe cognitive impairment (MMSE 0-10).Participants had a mild to moderate functional impair-ment as measured by ADL and IADL scales (M = 6.53,

s.d. 3.8). The mean score on the NPI was 14.6 (s.d.14.7). PWD had a mean of 34.3 (s.d. 7.0) for their qual-ity of life and the mean was 28.6 (s.d. 5.7) for PWD’squality of life assessed by carers.Demographics and Clinical Characteristics of CarersTable 2 shows the demographics and clinical character-istics of carers. The age of the 128 carers ranged from41 to 92 years, with a mean age of 65.9 (s.d. 13.1). Mostof them were older people (67.5%), women (71.1%), andwere married (89.8%). Eighty two were spouses (64.1%)and 39 (30.5%) were a son/daughter of the person withdementia. The majority (79, 66.9%) were caring for theirrelative 24 hours a day followed by 31 (26.2%) whospent from 4 to 20 hours a week looking after the per-son with dementia. Almost three quarters of the carers(94, 74%) were living with the care receiver.The mean score for carer’s depression, measured by

the HADS-D, was 6.1 (s.d. 3.8, range 0-17) and 34(35.4%) carers scored as depression cases (HADS-D >7). For carer’s anxiety, the mean score on the HADS-A

Table 1 Demographics and clinical characteristics of people with dementia

Characteristic %/Mean(s.d.) 95% CI

Age (years) 60-64 2.6

65-79 42.8

80-94 54.6

Gender Male 48.7

Female 51.3

Ethnicity White 98.7

Black 0.7

Asian 0.7

Marital Status Single 2.0

Married/Living with a partner 55.3

Separated/Divorced 4.6

Widowed 38.2

Living situation Live Alone 32.9

Live with Others 67.1

Cognitive Impairment Severe (0-10) 14.7%

Moderate (11-20) 38.0%

Mild (> 21) 47.3%

Functional Status 6.5 (3.8) [5.97-8.03]

PWD’s QoL rated by themselves 34.3 (7.0) [33.05-36.65]

PWD’s QoL rated by carers 28.6 (5.7) [27.00-30.41]

BPSD 14.6 (14.7) [10.57-18.43]


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was 7.8 (s.d. 4.6, range 0-20) and 48 (50.0%) carers wereidentified as anxiety cases (HADS-A > 7). Carers had anaverage score of 33.2 (s.d. 17.1, range 0-74) on the ZaritBurden Interview, indicating a high level of burden (>24). Out of the 108 carers, 72 (66.7%) had high level ofburden (ZBI score > 24).

NeedsThe mean of total number of needs was 10.0 (s.d 3.3,range 3-19), and of these 7.38 were met needs (s.d. 2.8,range 0-17) and 2.64 were unmet needs (s.d. 2.5, range0-11). The frequency of CANE met and unmet needs byarea are shown on Table 3. The most frequent metneeds were memory (143, 94.1%), food (123, 80.9%),money (117, 77%), looking after home (115, 75.7%),drugs (97, 63.8%), physical health (96, 63.2%) and self-care (82, 53.9%). The most common unmet needs weredaytime activities (77, 50.7%), company (60, 39.5%), psy-chological distress (47, 30.9%), eyesight/hearing (33,22.0%), and accidental self-harm (which refers to

inadvertent risk situations such as leaving the gas tapson, getting lost, etc) (23, 15.1%).

Factors associated with unmet needsPWD who were not married (including those single,separated/divorced and widowed) had significantly moreunmet needs (M = 3.6, s.d 3.0) than those who were (M= 1.9, s.d 1.8) (U = 1914, p < 0.01). Social network typewas converted into two groups: low-community involve-ment (family dependent, local self-contained and privaterestricted network types) and high-community involve-ment (locally integrated and wider community focusednetwork types). Thus, low-community involvement net-works are small networks (1-6 members) with low levelsof community involvement and composed of few closelocal family ties (generally only one) and a small numberof friends and/or neighbours; whilst high-communityinvolvement networks are larger networks (+7 members)characterised by the presence of friends, neighbours and,in some cases, local members of the family; and by thehigh levels of community involvement.PWD living in alow-community involvement network had significantlymore unmet needs (M = 3.2, s.d 2.8) than those livingin a high-community involvement network (M = 1.7, s.d1.8) (U = 1281.5, p < 0.01). PWD who had higher scoreson the NPI (rs = 0.53; p < 0.01), lower quality of life(rated by carers) (rs= -0.25; p < 0.01), and those whowere cared for by a younger (rs = -0.22, p < 0.05) andanxious carer (rs = 0.22, p < 0.05) had significantly moreunmet needs (See Table 4). Also those who were lookedafter by a son/daughter had significantly more unmetneeds (M = 3.2, s.d 2.7) than those cared for by theirspouses (M = 1.8, s.d 1.8) (U = 1131.5, p < 0.01). Noassociation was found between the total number of ser-vices received by PWD and unmet needs (rs = 0.136;p = 0.31).

Predictors of unmet needsIn order to determine which variables were the best pre-dictors of unmet needs, a stepwise multiple linear regres-sion analysis using the sub-sample who completed allquestionnaires included as predictors (n = 95) was carriedout (See Table 5). Unmet needs was entered as the depen-dent variable and the variables that, in bivariate analyses,were significantly associated with unmet needs (PWD’smarital status (married/other), PWD’s living situation(alone/with others), social network group (high-commu-nity involvement/low-community involvement), beha-vioural and psychological symptoms (NPI score), carer’sage, carer’s type of relationship with the PWD (spouse/others), and carer anxiety (HADS-A score) were enteredas independent variables. Multicollinearity was not presentwithin the model. Higher number of unmet needs waspredicted by: higher behavioural and psychological

Table 2 Demographics and clinical characteristics ofcarers

Characteristic %/Mean(s.d.)

95% CI

Age (years) 40-64 46.3

65-89 52.8

90-100 0.8

Gender Male 28.9

Female 71.1

Marital Status Single 4.7

Married/Living with apartner

89.8

Separated/Divorced 3.9

Widowed 1.6

CarerRelationship

Spouse 64.1

Children 30.5

Other relative 3.9

Friend 0.7

Co-residentCarer

Yes 74.0

No 26.0

Depression 6.1 (3.8) [5.20-7.32]

Anxiety 7.8 (4.6) [6.46-9.09]

Burden 33.2 (17.1) [27.76-37.13]


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symptoms (NPI score) (p < 0.01); low-community involve-ment social network type (p < 0.01); and being lookedafter by, a younger (p < 0.01), and a more anxious carer(p < 0.05) (F = 15.2, p < 0.001; R2 = 0.51)

Relationship between unmet needs, social networks andquality of lifeIn order to test the mediation effect of unmet needsbetween social network and quality of life, two mediationanalyses [35] were performed: one considering quality of

life rated by carers as dependent variable (DV), and theother using self-rated quality of life as DV (See Table 6).In the first model, three regression analyses were per-

formed; one in which social network was entered as theindependent variable (IV) and quality of life rated bycarers as the DV, another in which social network wastreated as the IV and unmet needs (the presumed media-tor) was treated as DV, and a last one in which social net-work and unmet needs were entered as IV with quality oflife rated by carers as the DV. The amount of mediation(indirect effect) was calculated by subtracting the regres-sion coefficient (social network to quality of life rated bycarers) in the third regression (with unmet needs con-trolled) from the regression coefficient (social network toquality of life rated by carers, again) in the first regression(with unmet needs not controlled). The reduction in theregression coefficient from the first regression to the thirdregression when unmet needs was controlled was 0.537 -0.200 = 0.337 which suggests a partial mediating effect.The Sobel test indicated that the direct effect of social net-work on quality of life rated by carers was significantlyreduced when unmet needs was added to the equation Z =2.11, p < 0.05. The same procedure was followed to deter-mine if unmet needs acted as mediator between social net-works and self-rated quality of life. The reduction in the

Table 3 Frequency (%) of CANE met, unmet and total needs

(n = 152) Met Needs n (%) Unmet Needs n (%) Total Needs n (%)

Accommodation 9 (5.9) 12 (7.9) 21 (13.8)

Looking after home 115 (75.7) 13 (8.6) 128 (84.3)

Food 123 (80.9) 9 (5.9) 132 (86.8)

Self-Care 82 (53.9) 14 (9.2) 96 (63.1)

Caring for another 1 (0.7) 0 (0.0) 1 (0.7)

Daytime Activities 46 (30.3) 77 (50.7) 123 (81.0)

Memory 143 (94.1) 8 (5.3) 151 (99.4)

Eyesight/Hearing 39 (26.0) 33 (22.0) 72 (48.0)

Mobility 50 (32.9) 14 (9.2) 64 (42.1)

Continence 31 (20.4) 8 (5.3) 39 (25.7)

Physical Health 96 (63.2) 9 (5.9) 105 (69.1)

Drugs 97 (63.8) 11 (7.2) 108 (71.0)

Psychotic Symptoms 14 (9.2) 14 (9.2) 28 (18.4)

Psychological Distress 30 (19.7) 47 (30.9) 77 (50.6)

Information 34 (22.4) 12 (7.9) 46 (30.3)

Deliberate Self-Harm 3 (2.0) 8 (5.3) 11 (7.3)

Accidental Self-Harm 33 (21.7) 23 (15.1) 56 (36.8)

Abuse/Neglect 11 (7.3) 4 (2.6) 15 (9.9)

Behaviour 10 (6.6) 5 (3.3) 15 (9.9)

Alcohol 3 (2.4) 3 (2.4) 6 (4.8)

Company 17 (11.2) 60 (39.5) 77 (50.7)

Intimate Relationships 4 (2.6) 12 (7.9) 16 (10.5)

Money 117 (77.0) 4 (2.6) 121 (79.6)

Benefits 13 (8.6) 1 (0.7) 14 (9.3)

Mean (SD) 7.4 (2.8) 2.6 (2.6) 10.0 (3.3)

Table 4 People with dementia’s and carer’s clinicalfactors and association with unmet needs

People with dementia’s factors Statistic p

Cognitive Status (MMSE) rs = 0.10 0.22

Functional Status (ADL-IADL) rs = 0.16 0.09

Behavioural and psychological symptoms (NPI) rs = 0.53 <0.01**

QoL rated by themselves rs = -0.15 0.09

QoL rated by carers rs = -0.25 <0.01**

Carer’s factors Statistic p

Depression (HADS-D) rs = 0.15 0.14

Anxiety (HADS-A) rs = 0.22 <0.05*

Burden Interview rs = 0.09 0.33

**p < 0.01; * p < 0.05; rs= Spearman’s Rho.


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regression coefficient from the first regression to the thirdregression when unmet needs was controlled was 0.965 -0.767 = 0.198 which suggests a partial mediating effect.The Sobel test indicated that unmet needs does not signifi-cantly mediate the relationship between social networkand self-rated quality of life (Z = 1.45, p = 0.14).

Testing the theoretical model using path analysisThe overall goodness of fit, for the hypothesized model,given by chi-square was c2 = 43.1, df = 17, p < 0.001.NFI was 0.67 and CFI was 0.73 indicating that thehypothesized model did not fit the data. After thisresult, an exploratory approach was adopted in order to

Table 5 Predictors of unmet needs

Variables (n = 95) Beta p

Behavioural and psychological Symptoms (NPI) 0.41 <0.001

Grouped Social Network Type (PANT) (low vs high community involvement) -0.33 0.001

Carer Age -0.28 0.005

Carer Anxiety 0.23 0.027

Variance explained by model (R2) % 51

Adjusted R2% 47

F = 15.2

p <0.001

Variables Excluded from the Model Patient’s marital status

Patient’s living situation

Carer’s type of relationship with the patient

Table 6 Mediation Analyses

Unmet Needs as Mediator between Social Network and Quality of Life rated by Carers

Dependent variable: Quality of life rated by carers

Regression 1 Independent Variable(s) B SE t p

Constant 27.065 1.240 21.828 0.000

Social network 0.537 0.441 1.218 0.226

Dependent variable: Unmet needs


Constant 4.041 0.498 8.121 0.000

Social network -0.508 0.177 -2.874 0.005

Dependent variable: Quality of life rated by carers


Constant 29.671 1.453 20.424 0.000

Social network 0.200 0.437 0.457 0.649

Unmet needs -0.736 0.235 -3.132 0.002

Unmet Needs as Mediator between Social Network and self-rated quality of life

Dependent variable: Self-rated quality of life


Constant 31.810 1.529 20.807 0.000

Social network 0.965 0.539 1.790 0.076

Dependent variable: Unmet needs


Constant 4.041 0.498 8.121 0.000

Social network -0.508 0.177 -2.874 0.005

Dependent variable: Self-rated quality of life


Constant 33.582 1.842 18.233 0.000

Social network 0.767 0.547 1.403 0.163

Unmet needs -0.470 0.278 -1.694 0.093


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construct a model that better reflects the data. The ori-ginal model was modified following this process: Step 1:All the paths that had significant correlations wereadded to the hypothesized model. Regression paths wereadded from behavioural and psychological symptoms tounmet needs, from behavioural and psychological symp-toms to carer anxiety (which was the only carer mentalhealth factor significantly associated with unmet needs),from carer anxiety to unmet needs, from carer anxietyto quality of life rated by carers, from carer age (whichin bivariate analyses was found associated with unmetneeds) to unmet needs, from self-rated quality of life toservices received, and the last one from living with othersto social network. Two covariance paths (drawn frombivariate analyses) were also added, one between carerage and living with others and the second one betweencarer age and behavioural and psychological symptoms.The fit of the model after Step 1 was c2 = 9.28, df = 17,p = 0.66; NFI = 0.86; CFI = 1.0; RMSEA = 0.0, indicat-ing that this model still did not fit the data. In order toobtain a model which fits the data, the next steps (2 and3) consisted of removing non significant paths one byone, starting with the least significant. Step 2: The pathfrom carer age to unmet needs was removed (c2 =10.24, df = 18, p = 0.74; NFI = 0.90; CFI = 1.0; RMSEA= 0.0). Step 3: The path from unmet needs to quality oflife rated by carers was removed. After removing thislast path, the rise in c2 statistic for the model was morethan the critical ratio (showing that the resulting modelis significantly less good at fitting the data). The fit ofthe new model improved considerably (c2 = 11.79, df =19, p = 0.89; NFI = 0.92; CFI = 1.0; RMSEA = 0.0), how-ever, in order to obtain a more parsimonious model, theaccepted criterion of removing one by one the pathswhich were not significant –starting with the least sig-nificant– until the point when the rise in c2 statistic forthe model was more than the critical ratio (showing thatthe resulting model is significantly less good at fittingthe data) was used. Figure 1 shows the model that bestfit the data (n = 152). The general goodness of fit wasc2 = 13.4, df = 22, p = 0.92 indicating a good fit. NFIwas 0.92 and CFI was 1.0 showing that the model fitwas very good. Finally, the RMSEA index was 0.00, 90%CI (0.00-0.02) indicating also a parsimonious model.Having more behavioural and psychological symptoms(as measured by NPI), living alone and having a low-community involvement network were significant pre-dictors of unmet needs. Higher levels of anxiety incarers were predicted by having more behavioural andpsychological symptoms in PWD. A higher carer-ratedquality of life was predicted by a higher self-rated qual-ity of life and fewer behavioural and psychological symp-toms. In addition, a higher self-rated quality of life waspredicted by fewer unmet needs; and a higher self-rated

quality of life was associated with a low use of services.Finally, behavioural and psychological symptoms, livingsituation (alone vs. with others), and social networks, allhad indirect effects on self-rated quality of life throughunmet needs, and also on carer-rated quality of lifethrough self-rated quality of life.

DiscussionThis was the first study which used a theoretical modelto illustrate how unmet needs, social networks and qual-ity of life of PWD living at home were interrelated witheach other and with the PWD’s and carer’scharacteristics.

Factors associated with unmet needsThe mean number of unmet needs of PWD in thisresearch was higher than those assessed in shelteredhousing [8] but it was lower than the unmet needsfound for PWD in residential care [1]. This is congruentwith the fact that whereas PWD living in shelteredhousing are less dependent and might have better accessto support, PWD in residential care had a higher preva-lence of depression, anxiety, physical dependence, andbehavioural problems [1]. Despite this, the most com-mon unmet needs were the same as in residential caresuggesting that PWD may have similar unmet needs inthe community or in institutional care. The finding thatPWD who had a low-community involvement networktype had higher unmet needs than those who had ahigh-community involvement suggests that it is impor-tant to maintain community involvement for PWD foras long as possible. In the UK, the resources availablefor PWD and their carers have increased over the lastyears, although this is not necessarily synonymous withbetter coordination and appropriateness in the deliveryof care [36]. Furthermore, for PWD who do not like toattend any kind of group, there are befriending servicesand outreach workers which provide a good opportunityto socialise, however the current availability of these inthe UK is limited. The contact of PWD with the worldoutside the home (even if the person is visited at home)could be beneficial in several ways: increasing theirinvolvement with the community, diminishing their psy-chological and social unmet needs and ultimatelyimproving their quality of life.The total number of services used by PWD was not

associated with unmet needs. However, PWD who hadattended a day hospital or a day centre over the lastthree months had fewer unmet needs than those whohad not. Perhaps these services are more suitable for theneeds of people living at home because they can offersupport for several areas such as daytime activities,memory, and company. However, these services werenot within the most used by PWD. There could be


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several reasons for this, such as the lack of need, lack ofavailability, lack of knowledge about their existence, lackof suitability for the carer, etc. In addition, PWD whohad been visited by a social worker and those who hadreceived home delivered meals had higher number ofunmet needs. However, after controlling for living situa-tion, this later association was explained by the fact thatpeople who used home delivered meals were livingalone [37].Higher behavioural and psychological symptoms (NPI

score) were associated with higher unmet needs. In linewith Hancock’s care home study [1], people withdepression and dementia had significantly more unmetneeds. Neil & Bowie [38] found that depression, agita-tion and anxiety were reported by family carers as themost distressing symptoms of dementia. Since the family

is the main provider of support for the needs of PWDliving at home and behavioural and psychological symp-toms are highly correlated with carer stress and burden[39] it is not surprising that people having more beha-vioural and psychological symptoms were found to havesignificantly more unmet needs.Consistently with previous studies, carers’ ratings of

quality of life were lower than those of PWD [3,18]. Inthe present study PWD with higher self-rated quality oflife had fewer unmet needs, but this association was notsignificant. In addition, higher carer defined quality oflife among PWD was associated with fewer unmetneeds. In residential care, Hoe et al. [3] found thathigher self-rated quality of life correlated with fewerunmet needs rated by researchers. In residential care,researcher ratings of unmet needs may be more likely to

Figure 1 Final Model. Numbers indicate standardised regression coefficients (*p < 0.05; **p < 0.01); e = latent error.


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mirror PWD’s views about their own quality of life dueto the homogeneous environment for participants. Incontrast, PWD living at home will have a more variedphysical and social environment (e.g, activities, relation-ships, support) and so their own views of quality of lifemay well differ from the researchers assessment ofneeds.Having high behavioural and psychological problems,

a low-community involvement network, being cared forby a younger carer, and being looked after by an anxiouscarer explained half of the variability in unmet needs.Besides carer’s age, all of these factors are modifiable.Thus, changing these factors would provide a chance todiminish the number of unmet needs. Psychosocialinterventions and/or pharmacological interventionscould be useful in diminishing neuropsychiatric symp-toms [40]. In addition, Cooper et al. [41] have pointedout that psychosocial interventions aiming to diminishdysfunctional and increase emotion-focused copingcould reduce carer’s anxiety. The not explained variancein unmet needs may be caused, among other factors, byindividual differences. The CANE allows the care practi-tioner to identify these individual unmet needs makingpossible the referral of each client to suitableinterventions.The mediation analyses showed that unmet needs

were partially mediating the relationship between socialnetworks and quality of life (self-rated or rated bycarers); however the mediation effect was significantonly for carer-rated quality of life. The PANT measuressocial networks from a structural perspective but doesnot provide any information about perceived social sup-port, this is, the level of satisfaction with the help pro-vided by the members of their social network. Thus, itmight be that when PWD assess their quality of life,their perception of the quality of the support receivedmay be more important than the structural aspect oftheir social network which may in turn perhaps be con-sidered more by the carers when assessing the personwith dementia’s quality of life.

Path analysisThe hypothesised model did not fit the data but analternative model generated using the path analysis tech-nique showed that people who had more developedsocial networks had significantly fewer unmet needsand, at the same time, those with fewer unmet needshad significantly higher self-rated quality of life. Thus,when rating their quality of life, PWD give more impor-tance to the number of areas in which they are notreceiving appropriate support (unmet needs) rather thanto the structural aspects of their social network, eventhough these two variables are significantly associatedwith each other. Unmet needs may be reflecting the

quality of care received which may have an impact onhow PWD rate their own quality of life.Improving the interventions and quality of care for

dementia are two of the main issues highlighted by theNational Dementia Strategy in the UK [42]. Therefore,the findings of this study have important implicationsfor service providers. Behavioural and psychologicalsymptoms, living situation, and social networks wereassociated with unmet needs and these are potentiallymodifiable. There are interventions available to reducebehavioural and psychological symptoms and to increasePWD’s community involvement. Since changing livingsituation is difficult (it is unlikely that people livingalone will shift to live with others, and that may not benecessarily beneficial), care providers should ensure thatPWD living alone have the opportunity to receive anyservices that allow them to be in contact with the com-munity, either by attending a psychosocial intervention(e.g. cognitive stimulation or reminiscence therapy) orsocial group; or by receiving support from a befriendingvisitor or outreach worker. Given their relevance topractice, it may be surprising that formalised assessmentof social networks has not become part of case manage-ment. This could reflect reluctance on the part of practi-tioners to introduce standardised measures perhapsbecause it may be seen as increasing their workloadand/or of little relevance to their everyday work.

Methodological ConsiderationsSince the severity of the cognitive impairment couldmake difficult to contact PWD directly, whenever possi-ble, the carer was also approached (either by phone orletter). However, this strategy resulted into two pro-blems (sources of recruitment bias). First, in some casesthe carer refused to participate on behalf of the personwith dementia and consequently the person withdementia did not have the opportunity to be seen andasked by the researcher about their willingness to takepart in the study. Second (either in absence of a careror when the carer could not be reached) some PWD liv-ing alone who were not able to follow the conversationby phone and consequently could not agree to be inter-viewed, had to be excluded.Even though carers were present in less than 10% of

the interviews, PWD in this situation may have felt thatthey could not express their views freely, and conse-quently their answers may have been affected by thepresence of the carer.Since the interviews were long, the carers sometimes

got tired and were unable to continue answering ques-tions. Consequently, the last instrument (NPI) was some-times not administered in order to prevent fatigue. Theaverage interview took between two and a half to threehours. Interviews were carried out at the participant’s


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own home (not in a clinical setting) which probably wasmore comfortable for the participants. If researchers hadused the time only to get specific and brief answers tothe questions, the interview would probably have beenshorter. However, doing this would have not contributedto establish a good rapport with the person with demen-tia and carers. When carers got tired, it was useful tohave a break and continue the interview after that. How-ever, because of limited financial resources, it was gener-ally not possible to visit people twice. In future researchthe interviews could be carried out in two sessions.Regarding the instruments, some of them could bereplaced or omitted, or short versions could be used. Forexample, since social networks and use of services wasmeasured by the PANT and CSRI respectively, it wouldbe feasible to use only the short version of the CANE.Also, the CSRI could be shortened including only thoseservices that are commonly used by PWD living in thecommunity; however this could lead to problems esti-mating the overall costs.

LimitationsIn the regression analysis performed to determine whichvariables were the best predictors of unmet needs, “liv-ing situation” did not result in a significant predictorwhereas in the path analysis the same variable came upas a significant predictor of unmet needs. This discre-pancy may have been the result of the different samplesize used for each analysis. While the regression wasperformed using only those participants who had com-plete data for all the predictors included in the model (n= 95), the path analysis was performed using maximumlikelihood method, which dealt with missing data gener-ating a model including the 152 participants. In addi-tion, since a broad definition of carer was used,distinctions between those without a carer and those liv-ing with alone with an available carer were limited. Also,the regression model may have particularly excludedsome people living alone who had no carer available.Therefore, the model generated using the path analysisshould be considered as a better reflection of the rela-tionship between living situation and unmet needs, indi-cating that living situation acts as a significant predictorof unmet needs. Higher behavioural and psychologicalsymptoms (NPI score) were associated with a higherunmet needs but some of these symptoms assessed bythe NPI are also included in the CANE (e.g. behaviour,psychological distress) which could have confoundedthese associations. However, the most frequent unmetneeds of PWD (except for psychological distress) werefound in areas not considered in the NPI such as, day-time activities, company, eyesight/hearing and accidentalself-harm. The fact that only two people from minorityethnic groups was recruited, may be reflecting the

difficulties these groups have in getting informationabout service availability and in accessing services in theareas where the recruitment was undertaken. Since thiswas a cross-sectional study, causality cannot be estab-lished from the results. Also, the final model generatedfrom the path analysis was produced using an explora-tory approach, so it has to be considered as a hypotheti-cal model which needs to be tested in future research.

ConclusionsPWD living at home had most of their physical andenvironmental needs met, but many social (daytimeactivities and company) and psychological (psychologicaldistress and deliberate self-harm) were not receivingappropriate support. This confirms what literature aboutcare management in dementia has already pointed out:first, the importance of systematically assessing to iden-tify areas that would otherwise remain unrecognised;and second, the importance of having a coordinatedinterdisciplinary care management in order to provideservices which target not only physical and environmen-tal areas but also psychological and social ones [43,44].The more important factors associated with unmet

needs of PWD were BPSD and social network. The factthat the former is a clinical factor and the latter is asocial one highlights the importance of treating demen-tia from an interdisciplinary perspective. PWD with alow-community involvement network had significantlymore unmet needs than those with a high communityinvolvement network type. According to the mediationand path analyses, social networks and behavioural andpsychological symptoms have an indirect effect onPWD’s quality of life through unmet needs. It would beinteresting to develop an intervention which comprisedthe coordinated work of health and social services alongwith the voluntary sector. Thus, the management ofPWD living at home would consider interventions aim-ing to decrease unmet needs by reducing behaviouraland psychological symptoms (through pharmacologicaland/or psychosocial interventions) and involving PWDin the community (through attending to psychosocialinterventions and/or social groups). By doing this,PWD’s quality of life will be potentially improved.Finally, studying the effectiveness of this type of inter-vention would also provide the opportunity to test themodel generated in this study.

AcknowledgementsWe are grateful to all the staff and participants in Peterborough, London,Cambridge, and Liverpool who took part in this study. We would also like tothank Clare Wenger & Anne Scott who kindly provided the “Supportnetwork type algorithm” version1.2 to classify social networks’ types. Finally,Claudia Miranda-Castillo’s doctoral studies were made possible by thesponsorship of The Chilean National Scholarship for Graduate Studies“Presidente de la República”.


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Author details1School of Psychology, Universidad de Valparaíso, Av. Brasil 2140, Valparaíso,Chile. 2Department of Mental Health Sciences, University College London,67-73 Riding House Street, London, W1W 7EJ, UK. 3Dementia ServicesDevelopment Centre, Bangor University, Neuadd Ardudwy, Holyhead Road,Bangor, LL57 2PX, UK. 4North East London NHS Foundation Trust, MascallsPark, Mascalls Lane, Brentwood, Essex, CM14 5HQ, UK. 55 BoroughsPartnership NHS Trust, Station Road, Huyton, Liverpool, Merseyside, L36 4HU,UK.

Authors’ contributionsCMC designed the study, collected data, carried out the statistical analyses,wrote the paper, reviewed the manuscript and approved the final version.BW contributed to the interpretation of data, reviewed the manuscript andapproved the final version. KG collected data, reviewed the manuscript andapproved the final version. SO collected data, reviewed the manuscript andapproved the final version. CO collected data, reviewed the manuscript andapproved the final version. MO designed the study, contributed to theinterpretation of data, reviewed the manuscript and approved the finalversion.

Competing interestsThe authors declare that they have no competing interests.

Received: 12 February 2010 Accepted: 12 November 2010Published: 12 November 2010

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doi:10.1186/1477-7525-8-132Cite this article as: Miranda-Castillo et al.: Unmet needs, quality of lifeand support networks of people with dementia living at home. Healthand Quality of Life Outcomes 2010 8:132.

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